Karl Atkin
Biographic Data
| ID | 173384 |
|---|---|
| NAME | Karl Atkin |
| GIVEN NAMES | Karl |
| FAMILY NAME | Atkin |
| SIGNATURE | ATKIN K |
| AFFILIATIONS | University of York |
| ORCID | 0000-0003-1070-8670 |
| VERIFIED | Yes |
| TOTAL WORKS | 83 |
| TOTAL CITATIONS | 261 |
| AUTHOR COUNT | 81 |
| EDITOR COUNT | 2 |
| FIRST PUBLICATION YEAR | 1989 |
| LATEST PUBLICATION YEAR | 2026 |
| H-INDEX | 11 |
Invisible Navigators: Migrant Parents and the Everyday Labour of Managing Sickle Cell Disease in the UK
Migrant parents of children and young people (CYP) living with sickle cell disease (SCD) must manage complex care needs within unfamiliar healthcare systems. Drawing on qualitative interviews with migrant parents in England, this study examines how migration reshapes healthcare navigation. Using navigation as an analytical lens, the findings show that parents act as de facto navigators, coordinating services across healthcare, education and welfa…
Striving for Presence on a Hospital Ward: Phenomenology and Re-Embodiment for a Nurse-Operated Telepresence Robot
This article examines the phenomenology of nursing care delivered through Välkky, a full-body teleoperated humanoid robot trialed in a Finnish hospital ward in 2023. Bringing science and technology studies into dialogue with phenomenology, we analyze qualitative data from observations, focus groups, and interviews with nurse-operators, managers, roboticists, and one patient involved in the pilot. We argue that Välkky's deployment constituted a “r…
A Racialized Capitalism Perspective on the Work and Employment of Black and Minoritized Ethnic Workers Living With Sickle Cell Disorder
Little is known about the employment experiences of Black minoritized ethnic workers in England with sickle cell disorder (SCD). Using Satnam Virdee's concept of racialized capitalism within the context of a critical discussion of intersectionality, we argue that their experiences are usefully understood as shared occurrences of racism determined by structural conditions across three generations. Drawing on in‐depth interviews with 47 individuals…
Connecting care: Understanding the relational dimensions of supporting migrant children and young people living with sickle cell disease
Migrant children and young people (CYP) living with sickle cell disease (SCD) in the UK face persistent, intersecting barriers to care. While existing research often maps these barriers, less is known about how service providers navigate them in practice. This study draws on Tronto’s ethics of care framework (1993; 2013) to examine how healthcare professionals and third-sector organisation workers enact care for migrant CYP living with SCD within…
Choices and Support on the Maternity Journey in the UK: Voices from Women with Cerebral Palsy
Introduction: The number of disabled women, including those with cerebral palsy (CP), experiencing pregnancy and motherhood globally is increasing. This could be attributed to equality legislation, medical advancements (including assistive reproductive technologies), and strong activism and support networks of disabled women raising awareness of their rights and choices. These women, however, continue to face disadvantages and discrimination. Met…
Välkky 's voyage on to a hospital ward: Expectations, explorations and emergent robocentric nursing care
Drawing on ethnographic fieldwork in Finland, we report on the trial of a teleoperated care robot named Välkky introduced onto a fully operational hospital neurological ward. Our data revealed a narrative arc where participants' early expectations of the hospital-based trial altered as the project unfolded. Greeted with techno-excitement and experimental enthusiasm about the place of robotics in reshaping roles within clinical care, Välkky became…
Negotiated care practices: The experiences of young people who question their gender, their parents and the healthcare professionals who support them
Care, while having no clear boundaries, facilitates a nurturing that requires a disposition to act in another's interests. Care, however, is never disinterested and dividing practices vie with transformative potential, to define what is regarded as appropriate support. Current healthcare for young people who question their gender identity reflect this tension, particularly in the UK, where ideological inscriptions can subvert caring intent. In ex…
Towards a Sociology of Healthcare Robots
We propose a sociological approach to healthcare robots that emphasises the heterogeneous ethics of mutual labour and the complex definitions of care that emerge through robot design/deployment. This argument is the product of a narrative literature review that examined assistive robots deployed in care settings. We found that although the deployment of healthcare robots has redefined the concept of care, as featured in geography, legal studies, …
Negotiating Care: The Biographical Narratives of Young Adults Who Questioned Their Gender When Younger
Current discussions about gender identity are increasingly politicised, particularly in the UK. An individual's body becomes a site of competing interests that attempt to regulate the physical, social and moral boundaries between biological sex and a socially realised gender. Care becomes defined within this context. The emerging biopolitics generates dividing practices that classify and regulate rather than situate a knowing subject, who is crea…
Chronic challenges: Picturing chronic disease by the World Health Organization
Chronic diseases are among the leading causes of mortality in the world, the subject of major regional and international efforts to tackle shared risk factors, implement prevention and control measures and set national targets as part of the drive towards universal health coverage. Yet there is a growing conviction that chronic diseases suffer an image problem. It has been suggested that the terminology 'dulls the senses' to the problems, and in …
‘Only parents can understand the problems and needs of children with thalassaemia’: Parental activism for thalassaemia care in Northern India
Evolving knowledge of genetics and improved clinical care have re-shaped life choices for those suffering from chronic, incurable conditions and their families. Yet the realisation of care requires complex navigation to access vital therapies which is often difficult for individuals or their family carers. In the article, we explore the struggles and strategies of parents of children with thalassemia (a genetically inherited blood disorder) in a …
Representing disabling experiences: Rethinking quality of life when evaluating public health interventions
Interventions that promote public health have the potential to transform lives, particularly for those who experience disability, where marked social and material inequalities occur across the life‐course. When evaluating such interventions, health‐related quality‐of‐life is regarded as a primary outcome and used to inform evidence‐based practice. Quality‐of‐life measures, however, are not straightforward heuristic devices but express technologie…
The perception of parents with a child with sickle cell disease in Ghana towards prenatal diagnosis
Using qualitative process evaluation in the development of a complex intervention to advance person-centred practice by pharmacists: The Medicines and Alcohol Consultation (MAC)
In order to effectively evaluate complex interventions, there have been calls for the further integration of qualitative methods. Qualitative process studies of brief alcohol interventions and medicines reviews are notably lacking. This article provides a grounded example through the presentation of findings from an embedded qualitative process evaluation of a multi-site, pilot cluster RCT of a new intervention: the Medicines and Alcohol Consulta…
On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England
The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person's disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The re…
Community pharmacy and public health: Preserving Professionalism by Extending the Pharmacy Gaze
Community pharmacy faces ongoing challenges to its economic and social standing. A concern to legitimate professional status explains the attraction of public health. Interventions currently advocated by UK State-sponsored health care seek to reconcile the autonomous 'entrepreneurial' patient with market-driven solutions. Engaging critically with recent Foucauldian sociological work on pharmacy as a conduit for disciplinary power, we explore how …
How do older people normalise their drinking: An analysis of interviewee accounts
Understanding ‘race’ and ethnicity: Theory, history, policy and practice
Understanding 'Race' and Ethnicity: Theory, History, Policy, Practice
This new edition of a widely-respected textbook examines welfare policy and racism in a broad framework that marries theory, evidence, history and contemporary debate. Fully updated, it contains: • a new foreword by Professor Kate Pickett, acclaimed co-author of The Spirit Level • two new chapters on disability and chronic illness, and UK education policy respectively • updated examples and data, reflecting changes in black and minority ethnic de…
Rights to social determinants of flourishing? A paradigm for disability and public health research and policy
We need to understand how disability might have an accumulative impact across the life course, as well as how to ensure equity for people living with disabilities. This means conceptualising a social determinants of flourishing where we evaluate how exactly randomised controlled trials and public health interventions, not only lead to greater equality but also ensure rights to health and wellbeing
Do disabled people need a stronger social model: A social model of human rights
We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation. We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed in response to such threats to disabled people’s human rights. Disabled peopl…
Public health, research and rights: The perspectives of deliberation panels with politically and socially active disabled people
Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories…
Resignifying the sickle cell gene: Narratives of genetic risk, impairment and repair
Connecting theoretical discussion with empirical qualitative work, this article examines how sickle cell became a site of public health intervention in terms of 'racialised' risks. Historically, sickle cell became socio-politically allied to ideas of repair, in terms of the state improving the health of a neglected ethnic minority population. Yet, we elucidate how partial improvements in care and education arose alongside preventative public heal…
Social disparities producing health inequities and shaping sickle cell disorder in Brazil
Sickle cell disorder (SCD) is a severe recessive genetic condition manifesting in several complex forms. It is a cause of high mortality rates across the world, affecting predominantly non-white populations. This article aims to discuss how persistent social disparities and health inequalities in the Brazilian context can produce negative effects in lifelong conditions such as Sickle Cell Disorder. Appearing usually in the patient’s first year of…
Self-Management of Chronic Pain: The Role of Religious Faith
Self-management forms an essential part of the management of chronic pain. It affects approximately 7.8 million people in the United Kingdom, with older people more likely to live with chronic pain. In the United Kingdom, the National Health Service is committed to providing patient-centered care, which embraces the religious and spiritual needs of patients. This aspect of care is governed by uncertainty; there is a lack of understanding about th…
Living a 'normal' life: Young People Coping With Thalassaemia Major or Sickle Cell Disorder
Do disabled people need a stronger social model: A social model of human rights
We introduce the social model of disability by reflecting on its origins and legacy, with particular reference to the work of the Union of the Physically Impaired against Segregation. We argue that there has been a gradual rolling back of the rights and entitlements associated with the social model of disability. Yet no alternative for the social model has been proposed in response to such threats to disabled people’s human rights. Disabled peopl…
Ethnic density effects on maternal and infant health in the Millennium Cohort Study
Pumping iron: Compliance With Chelation Therapy Among Young People Who Have Thalassaemia Major
Compliance with medical regimens is not simply a technical or practical task but part of the everyday experience of living with a chronic illness. Any discussion of compliance must, therefore, begin from the individual's personal and social context. This paper explores how young people who have thalassaemia major respond to their daily chelation therapy. It suggests that compliance dominates the young person's narratives and represents the most d…
Young South Asian deaf people and their families: Negotiating Relationships and Identities1
This paper explores how various and competing identity claims are negotiated by young deaf people and their families. Our findings, based on group and individual interviews with young South Asian deaf people and individual interviews with their families, illustrate the complex realities of identity negotiation and how this process occurs against the backdrop of ethnicity, religion, gender, racism and deafness. More generally, the structures again…
Family care-giving and chronic illness: How parents cope with a child with a sickle cell disorder or thalassaemia
There has been increasing interest in the way parents cope with childhood chronic illness and a shift away from merely describing the 'burdens' of care. An emphasis on coping by introducing ideas such as co-ordinated, accessible and appropriate service delivery as well as empowerment raises important policy and practice issues for public health. This paper, by drawing on qualitative material from a project evaluating service support to families c…
Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals
Genetic screening and haemoglobinopathies: Ethics, politics and practice
Sickle cell, habitual dys-positions and fragile dispositions: Young People With Sickle Cell at School
The experiences of young people living with a sickle cell disorder in schools in England are reported through a thematic analysis of forty interviews, using Bourdieu's notions of field, capital and habitus. Young people with sickle cell are found to be habitually dys-positioned between the demands of the clinic for health maintenance through self-care and the field of the school, with its emphases on routines, consistent attendance and contextual…
The dilemmas of providing welfare in an ethnically diverse state: Seeking Reconciliation in the Role of a 'Reflexive Practitioner
English Despite an increasing commitment to tackle disadvantage and discrimination, welfare states in the West struggle to provide accessible and appropriate health and social care to people of minority ethnic populations. This article analyses the dilemmas of welfare provision in an ethnically diverse state by drawing on empirical findings from a qualitative study exploring the perceptions and experiences of family life and social support for pe…
Being deaf and being other things: Young Asian people negotiating identities
Disclosure and sickle cell disorder: A mixed methods study of the young person with sickle cell at school
Continuity, commitment and context: Adult siblings of people with autism plus learning disability
Sibling relationships are usually lifelong and reciprocal. They can assume particular significance when a brother or sister has a learning disability. Until recently, adult siblings of people with disabilities such as severe autism have been ignored by policy, practice and research. This qualitative study contributes to an emerging literature by exploring how adult siblings, who have a brother or sister with autism (plus learning disability) and …
Carers and Services: Factors Mediating Service Provision
The article explores factors mediating the relationship between carers and service provision, exploring the judgements and expectations that lie behind the complex and sometimes seemingly inconsistent pattern of provision for carers. The article which is based on an empirical study teases out a series of factors that structure responses in this area covering: the attitude adopted by the carer to his or her caring role; the views of the cared-for …
Social disparities producing health inequities and shaping sickle cell disorder in Brazil
Sickle cell disorder (SCD) is a severe recessive genetic condition manifesting in several complex forms. It is a cause of high mortality rates across the world, affecting predominantly non-white populations. This article aims to discuss how persistent social disparities and health inequalities in the Brazilian context can produce negative effects in lifelong conditions such as Sickle Cell Disorder. Appearing usually in the patient’s first year of…
Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders: To What Extent do Faith and Religious Identity Mediate Choice
When making decisions about prenatal diagnosis, couples not only draw on their understanding of the condition but also broader aspects of their cultural identity. This article looks at how faith and religion mediate attitudes towards screening, prenatal diagnosis and termination of pregnancy for sickle cell and thalassaemia disorders. The article specifically reports on a qualitative study, which used focus groups from a variety of faith communit…
Supporting Asian Deaf Young People and their Families: The role of professionals and services
This paper discusses how Asian deaf young people and their families engage with welfare provision. Our findings, based on group and individual interviews with young deaf people and individual interviews with their parents, explore the assumptions underlying current provision and how they influence the options available to young people and their families. The paper suggests that the welfare state exerts a form of social control where professional …
Ethnicity and Caring for a Disabled Child: The Case of Children with Sickle Cell or Thalassaemia
Services for haemoglobinopathies have been a major site of struggles for the black communities, yet the social research literature on haemoglobinopathies remains patchy and fragmented. We provide an overview of the literature on sickle cell disorders and thalassaemia major in the broader context of debates on childhood disability and chronic illness, and on ethnicity, racism and health care
Who's the guy in the room?' Involving fathers in antenatal care screening for sickle cell disorders
Addressing Ethnicity in Social Care Research
This article surveys recent developments in relation to the dimensions of ethnicity and ethnic disadvantage in social policy research and practice, with a focus on social care. While there has been limited increase in attention to ethnicity within general policy discussion and increasing sophistication within specialist debates, advances in theory and methodology have largely failed to penetrate the research mainstream, let alone policy or practi…
No one listens to me, nobody believes me: Self management and the experience of living with encephalitis
On the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England
The link between workers with sickle cell disorder (SCD) and employment has until now been seen through the lens of the person's disease, not their relationship to work (paid and unpaid). Using SCD as a case study, we foreground relations of employment, setting sickle cell and work into ecological context. In 2018, two focus group discussions and 47 depth-interviews were conducted with black disabled workers living with SCD across England. The re…
Public health, research and rights: The perspectives of deliberation panels with politically and socially active disabled people
Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories…
Critical realism, agency and sickle cell: Case Studies of Young People With Sickle Cell Disorder at School
Critical realism suggests that historical structures may operate as underlying generative mechanisms but not always be activated. This explains the near-absence of references to racism by black students with sickle cell disorder (SCD). Through case studies we show how latent mechanisms are not activated, and how social actors come to develop corporate agency. Themes discussed include: wider/historical racisms (carers' own experiences of overt rac…
Negotiating Care: The Biographical Narratives of Young Adults Who Questioned Their Gender When Younger
Current discussions about gender identity are increasingly politicised, particularly in the UK. An individual's body becomes a site of competing interests that attempt to regulate the physical, social and moral boundaries between biological sex and a socially realised gender. Care becomes defined within this context. The emerging biopolitics generates dividing practices that classify and regulate rather than situate a knowing subject, who is crea…
Asian elders' knowledge and future use of community social and health services
Although there is evidence to suggest that black people are disadvantaged in terms of health, underuse of community services by black elders has also been widely documented. The views of Asian, Afro‐Caribbean and white elders on a wide range of issues associated with community care were studied as part of a larger research project in Central Birmingham. Analysis is still in progress and the focus here is on one selected theme: the knowledge and p…
Health, Illness, Disability and Black Minorities: A Speculative Critique of Present Day Discourse
The idea of incorporating a user perspective was central to the design of a study looking at services for, and the needs of, Black minorities. The initial assumption of this work was that health, illness and disability are intimately connected to the way people construct their social realities. The ideas and attitudes individuals hold about their health and disability, however, are also organised within a particular discourse. This discourse is n…
Community Care in a Multi-Racial Society: Incorporating the User View
Recent policy debates are beginning to recognise the potential significance of race in formulating social care policy. This occurs within a wider policy context that emphasises user views. Community service provision, however, has not been responsive to the views of the black user. This paper, by exploring current policy and practice, argues that successful community care cannot rely merely on an understanding of black user views. It must also ap…
Community care and voluntary provision: A review of the literature
(1993). Community care and voluntary provision: A review of the literature. New Community: Vol. 19, No. 4, pp. 659-667
Books
John Western, A Passage to England: Barbadian Londoners Speak of Home London: University College London Press, 1992, 336 pp., £30.00 h.b. W.I.U; Ahmad (ed.), The Politics of ‘Race’ and Health Bradford: Race Relations Research Unit, University of Bradford/Bradford and Ilkley Community College, 1992,157 pp., n.p. p.b. James F. Hollifield, Immigrants, Markets and States: The Political Economy of Postwar Europe Cambridge, MA and London: Harvard Unive…
Community care in a multi-racial Britain: An introductory note
Ethnic Origin and Practice Nursing: The Effect of a Possibly Controversial Question on a Postal Survey
Much literature assesses the impact of various factors on response rates to postal questionnaires. Little work, however, evaluates the effect of 'controversial' questions on rates of return. Recent debates suggest that one such question concerns ethnic origin and some writers argue that asking this question could affect response rates. This research note explores this issue in more detail, first by examining the effect of an ethnicity question on…
Carers and Services: Factors Mediating Service Provision
The article explores factors mediating the relationship between carers and service provision, exploring the judgements and expectations that lie behind the complex and sometimes seemingly inconsistent pattern of provision for carers. The article which is based on an empirical study teases out a series of factors that structure responses in this area covering: the attitude adopted by the carer to his or her caring role; the views of the cared-for …
Ethnicity and Caring for a Disabled Child: The Case of Children with Sickle Cell or Thalassaemia
Services for haemoglobinopathies have been a major site of struggles for the black communities, yet the social research literature on haemoglobinopathies remains patchy and fragmented. We provide an overview of the literature on sickle cell disorders and thalassaemia major in the broader context of debates on childhood disability and chronic illness, and on ethnicity, racism and health care
Staying single in the 1990s: Single-handed practitioners in the new National Health Service
Care in Chaos: Frustration and Challenge in Community Care (Book)
Service support to families caring for a child with a sickle cell disorder or thalassaemia: The Experience of Health Professionals, Service Managers and Health Commissioners
Until recently, health care policy has largely ignored sickle cell disorders (SCDs) and thalassaemia. This is despite the difficulties faced by service users and their families: the consequences of which range from denial of informed choice to avoidable suffering and stress. This article, by presenting material from a qualitative evaluation of service support to families caring for a child with a sickle cell disorder or thalassaemia, examines the…
Genetic screening and haemoglobinopathies: Ethics, politics and practice
Screening and counselling for sickle cell disorders and thalassaemia: The experience of parents and health professionals
Primary care and haemoglobin disorders: A study of families and professionals
In the UK, around 600 people are affected by thalassaemia major and 6-10 000 by sickle-cell disorders. These haemoglobin disorders are recessively inherited and have greater prevalence in certain ethnic groups. This paper explores affected families' and practitioners' views about the role of primary health care in haemoglobinopathy services. The paper is based on a qualitative study of 62 parents of affected children and 51 professionals, from se…
Family care-giving and chronic illness: How parents cope with a child with a sickle cell disorder or thalassaemia
There has been increasing interest in the way parents cope with childhood chronic illness and a shift away from merely describing the 'burdens' of care. An emphasis on coping by introducing ideas such as co-ordinated, accessible and appropriate service delivery as well as empowerment raises important policy and practice issues for public health. This paper, by drawing on qualitative material from a project evaluating service support to families c…
Pumping iron: Compliance With Chelation Therapy Among Young People Who Have Thalassaemia Major
Compliance with medical regimens is not simply a technical or practical task but part of the everyday experience of living with a chronic illness. Any discussion of compliance must, therefore, begin from the individual's personal and social context. This paper explores how young people who have thalassaemia major respond to their daily chelation therapy. It suggests that compliance dominates the young person's narratives and represents the most d…
The individual and primary care: Service user, reflexive choice maker and collective actor
Many health policy interventions reflect implicit assumptions of cause and effect, contestable values and partial rationales - particularly in healthcare systems based on notions of entitlement and obligation. The objective-oriented nature of policies and the potential cacophony of narratives that underpin such interventions are not, though, explicable solely in terms of the achievement of particular ends envisaged by different policy actors. The…
The individual and primary care: Service user, reflexive choice maker and collective actor
Many health policy interventions reflect implicit assumptions of cause and effect, contestable values and partial rationales - particularly in healthcare systems based on notions of entitlement and obligation. The objective-oriented nature of policies and the potential cacophony of narratives that underpin such interventions are not, though, explicable solely in terms of the achievement of particular ends envisaged by different policy actors. The…
Supporting Asian Deaf Young People and their Families: The role of professionals and services
This paper discusses how Asian deaf young people and their families engage with welfare provision. Our findings, based on group and individual interviews with young deaf people and individual interviews with their parents, explore the assumptions underlying current provision and how they influence the options available to young people and their families. The paper suggests that the welfare state exerts a form of social control where professional …
Living a 'normal' life: Young People Coping With Thalassaemia Major or Sickle Cell Disorder
Being deaf and being other things: Young Asian people negotiating identities
Young South Asian deaf people and their families: Negotiating Relationships and Identities1
This paper explores how various and competing identity claims are negotiated by young deaf people and their families. Our findings, based on group and individual interviews with young South Asian deaf people and individual interviews with their families, illustrate the complex realities of identity negotiation and how this process occurs against the backdrop of ethnicity, religion, gender, racism and deafness. More generally, the structures again…
Ethnicity and the Politics of the New Genetics: Principles and Engagement
Identifying the genetic basis of disease is not a straightforward medical procedure but implicates the broader social, cultural and political context. Ethnicity represents an important part of this context, particularly given the confused and poorly informed debate about genetic differences among supposedly different 'racial' populations. Debates about the 'new genetics', however, have not engaged fully with the issue of ethnicity and racism. Thi…
Why ethnic minority groups are under-represented in clinical trials: A review of the literature
Randomised controlled trials (RCTs) are considered to be the gold standard in evaluating medical interventions; however, people from ethnic minorities are frequently under-represented in such studies. The present paper addresses a previously neglected debate about the tensions which inform clinical trial participation amongst people from ethnic minorities, in particular, South Asians, the largest ethnic minority group in the UK. In a narrative re…
Sociology (58 works) · Political science (47 works) · Psychology (44 works) · Medicine (43 works) · Law (25 works) · Nursing (24 works) · Gender Studies (23 works) · Hemoglobinopathies and Related Disorders (22 works) · Social Psychology (22 works) · Qualitative research (21 works)